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    Old 04-18-2005, 12:54 PM   #1
    starlet32079
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    Question Just told I had CFIDS...is this a real condition?

    Hello everyone,
    I am a 26 year old female and when I was 17 I had a very long bought with mono. I was sick for 6 months. After that I felt so much better. Then when I was 20 I felt very ill with mono like symptoms (you can only get mono once) well anyway it turned out that I was pregnant. My fatigue got so bad that I ended up having to quit my job. I went to the doctor and they told me I was so tired because I was pregnant. Well after I had my 1st daughter the fatigue didn't go away. Then the doctors told me I was just depressed and sleep deprived from my baby. I knew that was not the problem, it was a different kind of tired. My brain seems to be foggy and I hurt, my stomach is awful, my hips hurt, I have heart palpitations, I have tremors in my neck that won't go away, my thighs feel like they are on fire, I have lost 12 lbs in the past 3 months but I eat normal, I feel 2 times last week, well you get the picture.
    Anyway, in march of 2004 I had my 2nd daughter, and all the way through that pregnancy I felt great, hardly any fatigue, and even afterward I felt great. Now all of these things are back again.
    Is CFIDS a real thing? Or are doctors to lazy to find out what is really wrong? My mother had Multiple Sclerosis and it has alot of the same symptoms that I am having...why shouldn't they test for that...then at least there is some thing they can do to help. I myself am a little sceptical of this , my husband thinks it is a crock. I don't know what to think.
    I can't even enjoy going out and doing things with my family. What are my daughters going to think of me? I love my girls more than anything, but I feel like such a awful mom because I have no energy.
    I guess I am just looking for some suggestions or words of wisdom.
    anything would be great.
    Thanks

     
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    Old 04-18-2005, 10:50 PM   #2
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    Re: Just told I had CFIDS...is this a real condition?

    Unfortunatley CFIDS is real. It is a conidition that isn't very well understood though. I imagine they haven't tested for MS because you are young. I would recommend you find a good CFIDS doc in your area to help you with a treatment plan and do some research on different things and see if you can get better. If you haven't been tested for other things, then I would find another doctor.

    CFIDS is this strange mystery illness that confuses medical professionals. Other tests you may want to consider could include a sleep study and allergy tests and a full blood panel.

    Some people think CFIDS is really caused by stress or psychological problems. I wish that was the case. I tried to pursue that angle and talk to people about it- but everyone told me that it was definately not in my head.

    Most cases of CFIDS are triggered by a virus.

     
    Old 04-19-2005, 02:22 AM   #3
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    Re: Just told I had CFIDS...is this a real condition?

    The only reason I might question you having CFIDS is because of your weight loss. Usually you don't have this with CFIDS. I would also do research on other related illness as well, i.e. Lupus, MS, Lyme's, and if you see any similarities in your symptoms insist that your doc followup. You might need to see a Rheumatologist or another specialist who could order the proper tests. If it is something other than CFIDS, those conditions are ususally more identifiable.

     
    Old 04-19-2005, 01:41 PM   #4
    thomas3000
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    Re: Just told I had CFIDS...is this a real condition?

    What's your diet like and list your symptoms please.....What heritage? I urge you to not go the conventional route, the only thing that they can promise is to prolong your suffering...They're good at that...

    Last edited by thomas3000; 04-19-2005 at 01:43 PM.

     
    Old 04-22-2005, 08:59 PM   #5
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    Re: Just told I had CFIDS...is this a real condition?

    Quote:
    Originally Posted by thomas3000
    What's your diet like and list your symptoms please.....What heritage? I urge you to not go the conventional route, the only thing that they can promise is to prolong your suffering...They're good at that...
    Not all doctors are. I go to an infectious disease doctor whose son has the same thing I do. In fact it is well known(in medical circles) that his son suffers from same type of illness. It is believed to possibly be a genetic component as well as viral.

    There is no cure yet. Thankfully my doctor does not give me false hope. He can make me comfortable by making sure I get my sleep which was a huge problem. I was waking up two-three times a night and often had night sweats.

    I knew it was not a case of menopause as I had a full blown hysterectomy in 93. Why would a credible doctor prolong your suffering? That makes no sense. The fact is, THERE IS NO CURE FOR CFIDS as of yet. There are experimental drugs they are using but most people go into remission for a few months and then, relapse. That is the simple truth.

    I know many who have gone the supplement and diet route and it did nothing. I'm currently watching my diet as I was just diagnosed with Type II Diabetes but I was told I have CFIDS and I know there is no cure.

    Remember, there is still no cure for Muscular Dystrophy - again much of that is caused by a genetic component. I believe CFIDS is the same thing as does my dr along with a virus.

    A good dr will tell you to change your lifestyle and take it easy. Cut out the stress in your life and conserve your energy. Baby steps...Also, very important to get a good nights sleep and this is why they put you on medication to help with that.

    For me, I have nerve damage and take pain medication. The nerve damage is believed to be caused by the virus that is attacking my nerves.

    Doctors are not God but if you work with one that is caring and understanding and has a son with the same thing...well, what can I say?

    Kim Snyder did not lie....Michelle Akers did not lie......Blake Edwards did not lie......The gal who wrote Sea Biscuit did not lie..... you have all these people speaking out on CFIDS and they had lots of money to try different things and yet nothing worked.

    CFIDS is a real illness and is recognized by the CDC.

     
    Old 04-23-2005, 05:45 AM   #6
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    Re: Just told I had CFIDS...is this a real condition?

    I'm not going to argue with anyone on this subject...but i have seen how finding the underlying cause reversed everything under the sun...Cancer, autoimmune, cardiovascular disease, you name it...Why do people underestimate the fact that what we put into our bodies cause or contribute to illness....There will never be a cure for anything by taking drugs..Why haven't they found a cure for cancer, ms, muscular dystrophy, etc..Because they're looking for chemicals to accomplish this...I urge you to look into functional medicine...It works, and I have proof of that..deep rooted infections is another one that causes problems...Your health begins in the gut, if your gut is sick, so will the rest of your body..Doctors may mean well, but they're wasting time by writing prescriptions...I'm living proof because I went to several docs and none of them tried to find out "why" i got this way, they only wanted to give drugs...Wrong approach!!!

    Last edited by thomas3000; 04-24-2005 at 11:28 AM.

     
    Old 04-23-2005, 09:21 PM   #7
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    Re: Just told I had CFIDS...is this a real condition?

    I have seen many doctors. The good ones were very concerned with how I might have gotten this way and underlying causes. I have had countless tests- at first everyone hoped to find something simple like a thyroid or liver problem that could be easily treated. I was referred to a nutritionist and a physical therapist and several specialists and a chiropractor. By looking at how I respond to medications my doctors now can try to see why they might help me and what that could tell them about underlying disorders and how this all relates. But as my doctor tells me, medicine is not an exact science.

    Bad doctors smile and nod and say you are stressed and whip out the prescription pad after a cursury examination. Good doctors believe you when you tell them how you are feeling and so forth and will try to help you figure things out- be it life style changes or dietary or medicaitons. The people I have been referred to have referred me to yet more people. The PT referred me to a massuese. The nutritionist referred me to a stress counselor, and doctor helps me find a pain clinic, and the psychiatrist I saw was loopy so I need to find another one.

     
    Old 04-24-2005, 05:32 AM   #8
    thomas3000
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    Re: Just told I had CFIDS...is this a real condition?

    I totally understand what you are saying..I'm basically saying that even the doctors you are seeing don't have the diagnostic workup you need...They're missing something...What part of the country do you live in? Search the net for Dr. William G. Timmins...And I'll ask again, what's your heritage and what is your diet like? I can really help you...

     
    Old 04-26-2005, 08:35 AM   #9
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    Re: Just told I had CFIDS...is this a real condition?

    Quote:
    Originally Posted by starlet32079
    Hello everyone,
    I am a 26 year old female and when I was 17 I had a very long bought with mono. I was sick for 6 months. After that I felt so much better. Then when I was 20 I felt very ill with mono like symptoms (you can only get mono once) well anyway it turned out that I was pregnant. My fatigue got so bad that I ended up having to quit my job. I went to the doctor and they told me I was so tired because I was pregnant. Well after I had my 1st daughter the fatigue didn't go away. Then the doctors told me I was just depressed and sleep deprived from my baby. I knew that was not the problem, it was a different kind of tired. My brain seems to be foggy and I hurt, my stomach is awful, my hips hurt, I have heart palpitations, I have tremors in my neck that won't go away, my thighs feel like they are on fire, I have lost 12 lbs in the past 3 months but I eat normal, I feel 2 times last week, well you get the picture.
    Anyway, in march of 2004 I had my 2nd daughter, and all the way through that pregnancy I felt great, hardly any fatigue, and even afterward I felt great. Now all of these things are back again.
    Is CFIDS a real thing? Or are doctors to lazy to find out what is really wrong? My mother had Multiple Sclerosis and it has alot of the same symptoms that I am having...why shouldn't they test for that...then at least there is some thing they can do to help. I myself am a little sceptical of this , my husband thinks it is a crock. I don't know what to think.
    I can't even enjoy going out and doing things with my family. What are my daughters going to think of me? I love my girls more than anything, but I feel like such a awful mom because I have no energy.
    I guess I am just looking for some suggestions or words of wisdom.
    anything would be great.
    Thanks
    Your story is interesting to me...You were sick before you were pregnant, you got pregnant and felt much better, but sometime after the pregnancy you started feeling ill again. You know, there is a physician researching this phenomenon by the name of Dr. Samuel Yue, M.D. He has noticed that several woman with Fibro/CFS report the same findings. Supposidly, he has been able to pinpoint it to a hormone that is present in much higher amounts in pregnant women than non-pregnant women called Relaxin. Dr. Yue claims by supplementing with this hormone, you can reverse nearly all symtpoms of Fibro/CFS. There is an oral formulation of this product available called Vitalaxin that you may want to look into. I cannot tell you if he is on to something or if his theories hold any water, but maybe it wouldn't be a bad idea to try it.

     
    Old 05-03-2005, 06:29 PM   #10
    thomas3000
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    Re: Just told I had CFIDS...is this a real condition?

    {removed} i'm truly trying to help people...There's a lot of needless suffering out there and Md's and specialists don't have a clue on reversing and preventing disease....Medicine is shifting to a preventative nature...In California, 75 percent of the population is heading to alternative practicioners.....Conventional docs and presription meds are a dying breed...Thank god....

    Last edited by moderator2; 05-15-2005 at 02:40 PM. Reason: please report inappropriate posts rather than replying to them

     
    Old 05-03-2005, 10:28 PM   #11
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    Re: Just told I had CFIDS...is this a real condition?

    Just wanted to tell Thomas that I was also tested for candidia and h. pilori and they both came back negitive

     
    Old 05-04-2005, 04:35 AM   #12
    thomas3000
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    Re: Just told I had CFIDS...is this a real condition?

    Did u take a blood test or stool test or both for H pylori??? My blood test was negative but my stool test was positive...There is something stressing your body that is not allowing you to heal...What's your heritage?? I ask that to everyone cuz it's important...You have an underlying cause to your problem...Search hard to find it...it took me 9 mos to find what was troubling me...(gluten intolerance and infections)...Working on clearing those out next...(antibiotics yuck)...But it must be done....Good luck...

    Last edited by thomas3000; 05-04-2005 at 04:36 AM.

     
    Old 05-06-2005, 04:46 AM   #13
    peregrine
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    Re: Just told I had CFIDS...is this a real condition?

    Thomas,

    We should never stop trying to heal ourselves. So if you have information that might contribute to that process let us know what it is. I think what Kathy is referring to, however, is making claims of healing that are not substantiated. It is one thing to share what might have worked for you, quite another to then leap to the conclusion (and use language that suggests) that your method will heal CFIDS. In other words, just state your information. You don't then have to try to sell us on it as we can, and will, decide the merit of that information for ourselves.

    All the best.

     
    Old 05-06-2005, 05:41 AM   #14
    thomas3000
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    Re: Just told I had CFIDS...is this a real condition?

    First of all,

    This is not my method...It was something taught to me..Chronic stress is the number one cause of disease and illness...There are people out there who have food intolerances and chronic infections that don't even know it...I'll explain what happened to me...Out of the blue, I started getting panic attacks/anxiety/depression/fatigue/headaches...My uncle and aunt have the same thing....They're both on meds, they are functional, but not healed...There doc attributed this to low serotonin(without testing of course), gave them antidepressants and sent them on there way....I've noticed too many people focus on a diagnosis rather than a reversal or cure...anyway, how many docs would attribute severe anxiety/depression, with food intolerance and infections...Believe me, I was blessed to stumble onto functional medicine, and I'm just trying to educate people, that doctors don't learn this stuff...Chronic fatigue, fibromyalgia, ME, Cfids, etc..are just really a diagnosis docs give when they don't know what the hell is going on...There are causes for everything, my family is very gluten intolerant, and they think that mental issues run in the family....What CAUSES these mental issues....GRAINS,GRAINS,GRAINS!!!!and infections...I found that I have a H. Pylori and well as a parasitic infections..In the process of eradicating those now....I am truly, truly, trying to help, if people are skeptical, then there is nothing I could do about it....Cheers!!

    Last edited by thomas3000; 05-06-2005 at 06:43 AM.

     
    Old 05-15-2005, 02:19 PM   #15
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    Re: Just told I had CFIDS...is this a real condition?

    I don't know whether CFIDS is real or not. It is, nonetheless a waste-basket diagnosis. One of exclusion, not inclusion, a negative diagnosis, not a positive one. There have been many like it over history - notably hysteria, neurasthenias, somatoform disorders and CFS. These names are, although not technically analogous (different criteria are used for each), in practice they are. Doctors use them when they cannot attribute the condition to any other physical condition AND the patient is non-compliant with a psychiatric diagnosis or does not appear to have any psychiatric disorders.

    If you have been diagnosed with CFS, then you most likely are a waste-basket patient - sorry to say this, but if you asked your doctors their real honest opinions, most, not all (there are some good ones who do believe in CFS as being a real condition) will tell you it is because they don't know what they can do for you.

    This is not to say the experience of CFS is not real - that it is faked, or exaggerated or anything like that; it is however to say that it does not mean much as a diagnosis. It encompasses far too many conditions that cannot be diagnosed accurately either because tests are inconclusive, or the condition is 'mental'. Thus CFS includes patients with what I call 'real CFS', or ME - a condition characterised by metabolic deficiencies in muscles and some nerves - it is a positive diagnosis, but one that is seldom made because it is too obscure a test and doesn't lead to any improvement in treatment. It also however includes individuals suffering from anxiety/depression/personality disorders/psychoses/neuroses that do not consider or refuse to consider a 'mental' basis to their experience. There may also be a middle ground of individuals who suffer from an ME-like autoimmune/inherited/acquired metabolic deficiency that is currently beyond the scope of general medicine to analyze, understand and treat.

    I conclude therefore that the diagnosis of CFS serves only a few, rather benign purposes. Firstly, it permits doctors to define patients they either cannot or are not skilled to manage, as ill (thus subserving the sick role, its benefits for the sick and lack of liability for the doctor). Secondly, it provides patients with a desire to have a special diagnositic name for their experience with one. It says, you have this condition with this really long name and adds hypothetical credibility to the patients case. I am however of the opinion that CFS as it exists is actually a more negative diagnosis than a psychiatric one - it actually means far less, compounds the patients to the same group as imagining/malingering/hypochondriacals and offers NO treatment solutions. Thirdly, it does the magical job of confusing all individuals who go any where near trying to undertand it. It's not one disorder, it's a thousand in one box.

    Treatment? How silly. The disorder CANNOT be treated until it is broken down into its component parts. Separate the ME sufferers from the psychiatric disorders from the personality disorders from the autoimmune pathologies, then there is hope. What works for one will not work for another, unless they're suffering from the same thing. CFS is a symptomatic syndrome. Look at depression, AIDS, thyroid disorders, neurological disorders and every other CNS/endocrinological disorder that exists and you will see they all have a similar symptomatic profile.

     
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